A reflection on the last 3 years...

I was met with a challenge from a "online friend" who has been a great source of strength since I gave birth to Taylor, 3 years ago... She challenged me to sit down and type out the frustrations and the triumphs of the last three years... With a simple agreement that when I was done I would see that there are far more triumphs then challenges. So thank you March of Dimes for making me realize that Taylor's story matters and thank you to everyone who has been there the last three years.


So here we go -

Triumph #1 Taylor was released from the NICU just two months after she was born!
Challenge #1 Taylor was in the NICU and had a scary stay, that even though I remember it I am able to focus on the triumph of this!

Triumph #2 Taylor mastered physical therapy and walked before she turned 2!
Challenge #2 Carrying Taylor because she couldn't walk while 6 months pregnant was a challenge!

Triumph #3 Taylor learned how to speak and boy did she take off!
Challenge #3 Taylor hits pits of regression, still where she chooses to not speak to anyone or anything.

Triumph #4 Taylor successfully learned how to go down a slide, without screaming!

No challenge here!

Triumph #5 Taylor started putting phrases together about the age of 35 months and has mastered making three word sentences and sometimes she likes to surprise us and say more at once :) Like, " daddy I wet my bed, so you have to put my sheets in the washing machine" :)

No challenge!

Triumph #6 Taylor turned three!!!!!!!! The neonatologist in the NICU was a mean mean man, he informed us when Taylor was only 48 hours old that if she lived to see outside the NICU that she would most likely not make it to her third birthday! Well, guess what? We made it and we are making it past her 4th birthday!


Triumph #7 Taylor started school, a day I thought we would never see - I still get teary eyed when I say, its a school night. She truly has amazed us and taken off - completely potty trained at school and listens well.


I think with every kids life there are challenges, but with our life and with Taylor it is easy to get overwhelmed in the day to day therapies and challenges, but to see the positives in our life helps a ton!

So I leave you with this video It truly says everything that I want to say!

http://www.youtube.com/watch?v=COuQ8y2Adns


Also please be patient with me for the next couple of weeks - I am focusing on my family - Family is the greatest thing you ever get given. So embrace it and love them! <3

Set backs, Bifocals,& ABA

A lot has been happening in Taylor's corner - So much so that this mommy has been taken over once again by therapies.

Lets start with Set Back's - Taylor out of no where started stuttering extremely bad. About every two phrases she starts by stuttering. This means all of her goals and work in speech has to take a back seat as we focus on this new problem, as to hope to correct it before she is older. As her mother I should have seen this coming, she was doing so well, her brain was bound to need a catch up period at some point... Its a learning process for us, I am very thankful that we have Nick home for now to help with this set back.

Taylor recently got her new glasses - Bifocals :) She is adorable with them on! She is doing amazing with them, her next appointment is in January and we will see if they are actually working or not.


ABA - we recently took on another two therapies one is social group which is a half hour of social interaction facilitated by Taylor's speech therapist. She is doing amazing and has really made a good friend in the little boy that she plays with! I have also made a new friend who knows just how crazy this life is. Taylor also started with this same little boy peer ABA therapy - ( autism behavioral analysis) she is having a blast playing with her friend and does not even realize that she is in therapy!

This is it for now - Thank you all for being patient as I update the blog :)

Bedtime routine.

So lately, Taylor has been insisting that only her daddy can put her to bed - which is fine and all, but Nick is on swings which means he gets home long after she has hopefully been asleep.

Well this does not fly with Tay, instead we have screaming matches and arguments and door slamming... I swear its like living with a teenager. But nonetheless  I find myself sitting outside her door bawling like a baby - because no one believes me... She does not do it when Nick is home, she does not do it for anyone else - BUT me... What the heck did I do to deserve this?! Geez...

Praying we end this little game soon... Really miss my sweet cuddly Tay.

Catch up ...

So this will be a massive catch up and then I will try and be better about updating as much as possible!

Lets see -

Taylor is still in speech and OT - We go twice a week for a total of 4 hours...

Speech - I AM PROUD TO SAY - Taylor is caught up :) We will still attend speech, because Taylor still needs help coming out of her shell and expressing herself. A HUGE thank you to Mary Beth who has stood by Taylor and helped her overcome a lot in such a short amount of time. :)

OT - Taylor is doing great with fine motor activities, still working on her attention and getting her to focus for longer periods of time. :)

Taylor has been challenging this last week - She has had some of her extreme behaviors and I can only wonder if all of this is the "calm" before the storm. None the less, even though I joke about sending her away to boarding school... we love her and I am thankful she keeps our lives full of surprise :)

There ya go Mass overload but I will try and get on here and write a post regarding some issues we are having tomorrow :)

have a great night!

Challenge Accepted.

I was challenged to sit down and write out all of my feelings and frustrations of being a mother of an Autistic Child. Challenge Accepted ( 2 months later)

When we were given the "unofficial" ( I use that because only a Dev. Pediatrician can give us an official diagnosis) diagnosis of Taylor's Autism Spectrum Disorder, I cringed. I was already crying but the extreme anger I felt made me cringe - in fact I am not a violent person, but I wanted to slam things and punch the wall. It was kind of the "damn it" moment if I may. To this day, I have not come to terms with it and I still hold out hope that the Dev. Pediatrician will tell us otherwise when we see him in July. 

I get it, I hear ya, "Janine, just accept it and move on" - Point is I can not, not yet - if ever. Taylor was born at 31 weeks due to pre-eclampysia. I have not yet gotten over this and when I do I will be shouting it from the rooftops. Taylor being my first daughter and myself being only 20 realized real quick when they rushed her out of the OR that this was not going to be an easy ride, Seeing my daughter in a box caused extreme hatred <---- there I SAID it, HATRED. 

Unless you have ever had a baby in a box, do not even begin to try and analyze that Hatred. I hate all of the evaluations, I hate hearing how far behind she is, I hate when no one can tell me when this "nightmare" will be over, I hate that she will randomly refuse to speak, eat, or drink, I hate that she has extreme meltdowns and tries to hurt herself and me, and I hate that everyone keeps telling me not to worry about her. 

I also envy every "normal" kids parents - and I am one of them. I hate that there is no normal... You see this hatred started 3 years ago. When I had Taylor and all the other mom's got to enjoy having their children in the room with them, I had to take a trip down hallways and through doors just to get to my baby, I had to come home without my daughter, I had to stare into an empty bassinet for 6 weeks waiting for the Dr. to release her. 

I hate that my father was not there to hold his daughter and for me to take a picture for her baby book, I hate that if he would not have died 2 weeks prior there would have been a chance I could have carried her a little bit longer, I hate that I had to put Mum through pain again I just am full of hate. 

One thing is for certain, I love Taylor Ann with all of the love a "normal" if not more Mommy does. I know the meaning of sacrifice better than most, I understand that to better the lives of my children that means sacrifice. 

So Autism? It sucks, I hate it and I wish that I did not have to face the giants of the Autism world, and the stares and rude remarks from people in the grocery store? Ya, you... I was you once, I rolled my eyes when I heard a kid screaming - Now I apologize and feel sorry that you can not understand that children will be children.... I will try hard to calm my child, but know that once Taylor enter's into a meltdown there is little to nothing I can do - So if you make a rude remark, be prepared to be embarrassed after. 

There - ya - go.

Hug your children tight and always tuck them in tight at night!

Update

Yesterday as most of you know we went to Taylor's three year well check - Let me give you a run down on the leading up to this appointment...

When Taylor was born I was not sure she was going to live to see the world nor did I think she would live much past 24 hours, in fact something that I do not share with many people is that I was scared my daughter would die before I could hold her for the first time. But little did we know that Taylor would surprise everyone and just 6 short weeks after she was born she would be coming home...

Her one year appointment was brought with a few tears, mainly because I was sad that her "baby" years went by so fast - but also because as we sat in the waiting room another one year old little boy was walking and talking up a storm, Taylor was sitting on the floor, completely silent. When we got back into the room to have her check up, the Dr asked me if I had heard of early intervention services, I replied a very firm no and told him I was not interested and finished the appointment and never looked back.

At 18 months, when Taylor was still not walking or talking I started to get concerned, I would like to stop and thank Tasha, without her emotional support I would not have picked up the phone and requested services for Taylor. Now, A lot of you Mom's with Kids who have little to no problems, you have made it clear you would have taken the Dr. up on his offer at 12 months, I did not want to - I do not know why I did not want to I just did not, so stop judging me.

The point is at her 18 month check up they screened her for Autism, she scored positive but not enough to raise enough concern and at that time I was just focused on getting through Nick being in Korea. When Taylor was diagnosed with Seizures just a short 2 months later, I knew that something was different and that the road that we were on was full of challenges.

Now, lets get up to speed to the last couple of months, Taylor has had extreme behaviors - I mean extreme - and any mom that say's to me well my kid does that too - Seriously go have them evaluated. Banging her head into the wall, kicking, screaming, throwing things, breaking things, you name it I have had it happen in the last couple of months.

You can all sit back and say kids do things at their own pace, but when a Dr. tells you your daughter is functioning at 18 months and SHE is THREE... Ya you start to wonder.

So, yesterday we brought her in - I should have known it was going to be rough from the moment the receptionist handed me the communication paper to fill out and I had to answer No, to several of the questions. I also should have known that when Taylor threw a fit because she did not want to stand on the scale that something bigger and out of my control was about to happen - I mean her whole life before something "bad" happens we have had "signs" if you will that lead up to it.

When we got into the room, FINALLY - Tay seemed okay, I mean what kid does not like it when someone hands them stickers and lets them go to town? The minute the thermometer was brought out that was all she wrote, and honestly between Addyson saying over and over " want to get down" and Taylor freaking out - I am surprised the Dr. did not run out of the room - surprisingly he just smiled and said here let me take Tay here let Addyson down and lets talk calmly ...

I thought I was good - I thought I had my emotions in check, but when he asked how we were doing I lost it - then spilled out Taylor's behavior's and my fear that her therapists were right, she needed an evaluation for Autism and she needed it NOW. A few clicks on the computer and a piece of paper later *that I filled out* We had it - not an extensive evaluation but enough to send her straight to a dev. pediatrician. She scored positive and worse than when she was 18 months. She scored critical in 4 areas - FOUR.

Nothing could have prepared him for agreeing with my fears. NOTHING.

Yesterday I was crushed, I was absolutely crushed but with the help of friends who have special needs children they picked me up - and still are. For that I am thankful. I am also thankful for my friends with normal kids that they have not taken off yet - that they still allow their children to play with Taylor. I need that sense of Normal right now - So if I seem a little off for the next couple of weeks, and I snap at you or lose it or choose not to talk to you about everything it is because I need to process it with my family and few very few select friends.

I hate the word Sorry - I know it is a natural response to anything - I hate it. You can say it and I will smile and rattle off something a long the lines of its okay nothing you did, nothing anyone did.

Crazy how the last three years have prepared me for this moment, but none could have really prepared me - if that makes sense.

So hug your babies close - I know for now that is all I can do - is be thankful she is Alive and Healthy. She is living with Autism and not suffering from it :)

She is only 3.

So this morning while browsing Facebook I came across this picture about a three year old... and I realized, I do not let Taylor really just be a kid... I am so focused on her meeting goals, meeting milestones, that I forget some times the best learning is that of just playing... We are in no where as strict as some parents,  I mean my children jump on the couch, ground, beds - really just about anything they can... Not once have I gotten on to them for it... in fact the way Taylor learned how to jump 2 years late is all thanks to the couch. :)

I challenge everyone to just let their children be children - they can not sit still for as long as we can, sometimes eating spaghetti with their fingers is the best way - Now I am not saying do not have rules, but before you set them make sure you remember, they are only children once!

Have a great day with your munchkins - remember only a child once. ;)